Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, September 24, 2010

Thank You One and All

My day has been spent with wound care people and about a million calls to arrange logistics of my care. Tomorrow I hope to catch up on email and bills. My God the bills are daunting. But that is not what I want to write about. I read over my posts since I got sick and am taken aback by the support of my readers. Your words have moved me deeply and I am sure I will take up some offers for books and other support. I never cease to be amazed by the vibrancy of the disability community and how willing they are to lend a hand. It is not just the well known groups I admire such as ADAPT and Not Dead Yet but all the other seemingly nameless people moving forward too. I truly love this amorphous cyber community of people with a disability that supports one and advocates for the civil rights we value.

I wish I could write more but I have transportation issues. I need to see the MD next week. A round trip via ambulance is not covered by insurance and will cost $1200. Obviously I need to figure out a back up plane. No idea yet what this backup plan will entail.

8 comments:

Suggestion for transportation: see if someone has a Chrysler or Dodge minivan with seats that fold into the floor. Someone can then put down some padding/foam and then drive carefully. Even renting one of those for a day is much cheaper!

The bill paying/insurance/financial issues can consume all of a patient's or caregiver's time--it can help to set aside a few hours at a time and to take days away from it. Scheduling times for it and the planning can help you put it aside so it doesn't consume everything. Please let me know if you need further help/advice in this regard, as we've been through the worst with that.

Don't know what your positioning needs are, but audio books are good too if it gets tiring to hold books--Lene subscribes to a good service, and I'm sure some of us can pitch in to help in that regard. There are some good small board games/card games. I also highly suggest Lene's random posts at the end of each month (she puts a tag on the bottom of each that you can click on to get them to come up). They help provide some entertainment for the difficult days.

Let us know how we can help too if you think of anything. While not 100% bedridden for 5 months, I was almost 100% housebound (dr's visits only) and understand the toll. It was a really good idea to put your bed in the living room.

Oooh, that last idea from Frida is really good. Here's the negotiating phrase to power-punch the talk: "Is that the best you can do?" 'Course that's after being the best engaging advocate possible with a true human on the other end of the line.

Only have a bad-humor question - skype? Or does the MD have to do the cutty-bleedy stuff?